"I Had the Cancer No One Talks About"

After a devastating diagnosis and major gynecological surgery transformed author Darci Picoult's body, she wondered whether anything — her marriage, her sex life, her relationship with her daughters — would ever be the same. It wasn't. She came through stronger, more outspoken, and more intimately connected to the people she loves.Darci is posting updates on her progress (she gets better every day!) at redbookmag.com/cancertalk.

It began with a bump. The size of a pinhead. Innocuous. An innocuous little pinhead of a bump on my vulva. Given that my gynecologist said the bump was probably nothing, I laughed it off. Which, in turn, made my bump mad. Very mad. It wanted my attention. And so it grew. I smeared it in medicine. It grew more. More medicine. More growth. Hanukkah came. Then Christmas. A war raged between us. I went to battle in the middle of the night with salt baths and creams. Prayed for its departure as my children lit menorah candles and friends came and went, toasting the new year.

My resolution that year, 2009, was to go back to my gynecologist. I moved my feet slowly into the stirrups and pointed to the bump. Her face grew very still: "How did this happen?" An hour later I was getting blood drawn for surgery to remove it.

This all felt a little too familiar: My first gynecological surgery was at age 12, after I discovered a dark spot on one of my labia that turned out to be a pre-cancer. It was removed, along with part of my inner lip, and I was fine. But then the news came out that DES — an anti-miscarriage drug that my mother and millions of other pregnant women used to take — increased daughters' risk of vaginal cancer, and scrutiny on that part of my body increased. Twice-yearly Pap smears and frequent biopsies became a "normal" part of my teens.

The intense focus on that part of my anatomy provoked me to write a play called My Virginia (my childhood name for my vagina), which explores the effect of DES on mothers and daughters. Prior to its debut, a photographer who resembled James Taylor was sent to take my photo. After he snapped the picture, I smartly asked him out. A few years later, we married. Larry and I traveled across the world as I performed My Virginia. We met women and men who would talk about the most personal parts of their bodies and lives, which, in turn, fed our talks. This intimacy defined our marriage and our sex life. It's what made us us. In 1998 and 2002, that "us" expanded to include our two adopted daughters, Olivia and Mollie.

The night before my surgery, I tell the girls about the bump and that my doctor wants to remove it. We are seated around the dinner table, and Olivia, then almost 11, raises her fork, as if it were a hand, wanting to know the exact location of the spot. "It's next to my vagina, sweetheart," I say as if it were my toe or cheek or belly. "Can we please not talk about this now? I'm trying to eat," says Mollie, then 7. "But I want to see it," says Olivia, shooting Mollie a you-are-too-young-to-understand look. I swallow hard. "You don't need to see it, Sweet—" Mollie jumps up, rips off her pants, a sudden change of heart: "Show her where it is on me!" Larry speaks up, finally, asking Mollie to sit down and finish dinner. She pulls up her panties, returns to her seat, and slurps a noodle.

Although the word cancer has been part of Larry's and my dialogue since we first met, we are still shocked by the biopsy results we get 10 days later: The bump on my vulva was malignant. After consulting several doctors, we finally meet with an oncologist whose measured approach makes me feel a little less panicked. His voice is calm and direct: "I think it's a two-step process. First, there are several more areas of abnormal tissue that need to be biopsied. What we find will tell us what to do next. If any of the new lesions are malignant, then we're talking about a much more invasive operation. I don't want to touch the clitoris, but we may have to." The clitoris? I glance at his resident, a young woman, who stares quietly at me. As does Larry. "Whatever needs to be done, I'll do," I say, determined to be a warrior despite wanting to run from the room, a mix of fear and shame at my heels.

A week after the biopsies, I'm waiting in an exam room in my oncologist's office when he pokes his head around the corner. "Great news, pal," he says. "All the biopsies came back negative. No cancer." I throw my arms up and shout, "Yes!" eager to jump off the table and forget this ever happened. But it's not so simple; I have still more strange spots. He asks me to think of my vulva as a garden, the abnormal areas being dandelions: "We may need to pull those weeds later, but for now, you're cured." That night Larry and I sit down to dinner and a bottle of wine to celebrate my cured garden. We talk about everything except my vulva, given that it has usurped our conversations for months. Then we clean the dishes, check on the girls, who are fast asleep, and head into the bedroom. We haven't made love in more than six weeks. The excisions had left me feeling mutilated and undesirable — but the craving to be touched and to touch overcomes my nervousness. We start tenderly, Larry questioning every move: "Does this hurt?...This?" I assure him I'm okay, despite a slight burning. I need to know I can do this, have this physical connection to my husband and to myself.

Nine months later, I discover a new growth. After a biopsy shows this one is pre-cancerous, my oncologist recommends a vulvectomy — a complete removal of the vulva. He will remove what is left of my labia, plus a small portion of the entrance of the vagina and tip of the urethra. Then he'll reconstruct the area using tissue from my thighs. The hospital stay will be a few days, recuperation is six weeks.

I tell Mollie and Olivia that I need more surgery, and we plan special mommy-daughter days so I can answer their questions. Mollie opts for Tim Burton's Alice In Wonderland and then dinner at a neighborhood pub that makes homemade mac and cheese and Brussels sprouts, her new passion. We talk about the movie, the yummy fried chickpeas they place on our table, and then my surgery: "What are they going to do now to your vagina?" I explain that my doctor is removing skin from the area outside of the vagina called the vulva. Mollie looks confused. Then lifts her little finger. "You mean if this is your vagina, your nail is your vull-vaa?" She giggles. I laugh too and nod, impressed by her analogy. "Mol, I want you to know you can say anything you want to anyone about this," I tell her. I wait for her to respond. "Okay?" Mollie flattens a chickpea with her hand. "Mom, I would never say anything. Especially to the boys in my class. All they talk about are their balls." I gulp my water. And continue: "As soon as I'm able to, I'll start walking you to school again." A long pause follows. "Mom? I don't really want you to take me to school if you're walking funny. It'll be embarrassing." Understood.

Olivia opts for a day at the mall (the girl loves to shop), then a Japanese restaurant for sushi. After we order, she leans forward: "Mom, I have to ask you something really personal." I take a breath, "Anything you want." "Do you think I'll get my period this year?" So that was it. "I do, but I can't predict." "Just guess. When? Next month? In two months?" This becomes the centerpiece of our discussion for the night — her budding sexuality, need for a bra, and curiosity over what is happening in her body. Any questions about what is happening in mine are put aside until dessert is served. "Mom, do you think you're going to need pads after your surgery? If you do, can I use some of them?" I'm relieved that what I'm going through with my most intimate parts doesn't seem to have made her afraid of her own — and so happy that Olivia is centered on herself right now, as she should be.

As the day of the surgery approaches, my nerves are keeping me up at night. How will I be able to walk? Sit? Have sex — ever again? What will I look like? Will Larry even want me anymore? My panic escalates and I call my doctor, who talks me through the surgery again, gently telling me what he is going to do — and why. His final words echo in my mind: "Remember, you had cancer."

I know that after surgery, sex will be off-limits for six to eight weeks, but it's everything I don't know that propels my desire to make love now. I worry about whether the reconstruction will work, and if I'll still have sensation. I get to keep my clitoris, but what if nerves are cut? I shove these thoughts beneath the bed and climb in next to Larry, eager to grab hold of him and not let go.

In the waiting room the morning of the surgery, The View comes on the television — Courtney Love is the guest. So there I sit, watching a former stripper sing, moments before having my vulva removed. Thoughts boomerang inside me: Every story line on TV revolves around sex. But what about those of us who can't make love? What if your sex drive is in reverse because in a place that should be divinely pleasurable, you feel pain? Isn't there anything that defines intimacy beyond throbbing bodies? Everywhere I look makes me feel less like a woman. And yet. I know there is something bigger, something more. My "womanhood" has nothing to do with my vagina, it is in me — in my nurturing of Mollie and Olivia, my work as a writer, my love of Larry. I repeat this to myself as I see my doctor approach.

"It went great," my doctor reports, with a deeply dimpled grin, once the surgery is done. He requests a mirror from the nurse and places it between my legs. I lift my head slowly, terrified by what I am about to see. There are lots of blue stitches — but my vulva looks almost normal. I look at my doctor, unable to speak. A moment later, Larry walks in. The doctor hands him the mirror, "Take a look at your wife!" The room goes silent. Larry puts down his backpack and leans in. His left eyebrow pops up, and he smiles. For days, doctors and medical residents drop by to see me. "Fascinating. Unique. Of real interest." Reviews I would want for my plays, but they're talking about my vulva.

I'm able to go home a few days later, but walking is still difficult (imagine John Wayne on downers) — and sitting is only possible with the help of a large blue pillow I lovingly call my "cloud." Mollie is the first to ask to see the results of my surgery. For years I had worked to create a dialogue of openness around my body and the girls', one without shame or embarrassment or fear. If I say no, won't she always wonder what I was hiding? Still, how many 8-year-olds have seen their mother's vagina that close up? Particularly one with stitches? "Okay," I say, my stomach in a knot. I lift up my skirt and pull down my underwear (extra large for comfort). She giggles. "Looks like a vagina to me!" Then, without taking a breath, "Do you have any gum?" Olivia's request comes when I'm stepping out of the shower later the same day. "Wow, you have blue stitches. Other than that it looks just like mine."

When I check myself, I see something different. Though on first glance my new lips appear remarkably normal and healthy, there are no layers or definition. And there is a clear view straight into my vagina and even of my cervix. I am both fascinated to glimpse the inside of me so clearly and devastated to look so exposed.

Almost four months after the vulvectomy, my doctor gives me permission to resume all activities. Given that I have already gone back to bathing and running, I know that means sex. I call Larry immediately and set an appointment for that night. I feel a mix of excitement and nerves — more than 20 years into our relationship, I can't help but smile at these emotions. After a good deal of laughing and kissing — mostly laughing, both of us acting like teenagers — Larry turns out the light. My stomach tightens in anticipation of the first touch. I feel something, muted but there, in my clitoris. I take a breath and try to relax, desperately wanting my body to work. His desire intensifies, as does mine. For the first time in years, there is no discomfort, no burning, no pain. This is great, I think, great. Then my heart stops: I don't hurt, but I don't feel much of anything. There's no pressure or stimulation. I am deeply connected to him mentally and emotionally, but physically I am numb, void of sensation.

Will physical feeling return? I don't know. Will my clitoris remain cancer-free? This too I don't know. What I do know is this: Though I have lost a part of my body and certainty about my sexual future, I gained a closeness to my girls and to Larry that has empowered us as a family. This year has redefined who I am as a mother, a wife, and a woman. Mollie and Olivia know they can ask me anything. Larry knows he and I can meet the scariest of times head-on. No matter what happens (or doesn't) in the bedroom, we will always have intimacy, strength, and love.

Darci is a Sundance playwriting and screenwriting fellow whose work has been produced regionally and in New York City. Her play My Virginia is available at amazon.com and on iTunes. Her latest film, Mother of George, is slated to start production soon, with Kerry Washington attached to star.

VULVA. THERE, WE SAID IT. NOW HERE'S WHAT YOU NEED TO KNOW ABOUT IT.

1. Exactly where it is! We use so many euphemisms, from "down there" to "va-jay-jay," that it's no surprise many women aren't sure what the vulva is. Answer: the inner and outer labia, clitoris, and pubic mound, explains David A. Fishman, M.D., director of gynecologic oncology research at Mount Sinai School of Medicine in New York City.

2. How to tell if something is wrong. Vulvar cancer is relatively rare — about one in 387 women will get it in her lifetime, compared with one in eight for breast cancer. But survival rates are lower, around 75 percent, so it's important to catch it early, Fishman says. "Knowing your body is critical," he says. Some signs of potentially cancerous changes:

· Sores or wartlike bumps that don't heal after four days.

· Skin that is thicker or a different color than the skin around it (tiny yellow dots on the inner labia are an exception — those are most likely just sebaceous glands).

· Dark, irregularly shaped moles or spots.

3. How to protect yourself. Get a yearly pelvic exam, even if you're not due for a Pap, and ask your doctor about a human papillomavirus (HPV) test. It's estimated that 40 percent of vulvar cancers are related to HPV — the virus that causes most cases of cervical cancer. For more info, go to redbookmag.com/cancertalk. —AMY LEVIN-ESPTEIN

Sensation is returning! Slowly but surely my nerves are regenerating. A cause for celebration, the human body reviving itself. Some get a new heart and it beats, a new limb and it moves. In my case, a new vulva and it feels. Am I excited? You bet. My doctor? Ditto. And my husband, Larry? Did you hear trombones playing all the way from our house in Brooklyn?

But what I really want to talk about is another set of nerves and feelings. The nerve it took to write that original article and the nervousness of seeing it in print. What did I do? I thought. Everyone will know the most intimate details of my life. My relatives in Texas, my acting students at New York University, strangers on planes who pick up the magazine at airport newsstands during the holidays. I envisioned people on the street pointing and whispering, "There's the vulva." As if that was it. That was me. One big vulva. And then I took a breath and thought back to why I wrote the article in the first place.

When REDBOOK's editor-in-chief, Jill Herzig, asked me to write about my medical ordeal, my initial thought was No! Then yes. Then no. Then, of course. Why not? If not me, then who? One doesn't talk about her vulva or vagina publicly, unless perhaps it is in the context of a great night or in a monologue by Eve Ensler. But diseased? That's for medical books or diary entries, or whispered in the privacy of one's home. My decision to unlock that door and invite you into my life was to give a voice to that whisper.

A whisper I encountered during my first set of surgical biopsies when an attending nurse brought me to her desk. After I stated my name and showed my ID bracelet, she asked, "Do you know why you are here?" I nodded. "To have surgery. Biopsies on my—" The nurse leaned in and whispered, "You don't have to say where."

Late that afternoon, after I proved I could pee, Larry drove me home. I called one of my daughters from the car to let her know I was fine. She was at the opening night of a Children's Film Festival with her friend Ruby. "Mollie, it's Mama." Her voice is soft. "Mama! Where are you??? At the hospital?" "I'm coming home, baby." She mumbled something into the phone. "Moll, can you speak up?" A faintly louder mumble. "Mollie, I can't hear you darling." Again a mumble. "Moll…" Then at the top of her lungs in her Brooklyn accent, "DOES YOUR VAGINA HURT?" Silence descended around her in the lobby.

For months I stood on the edge of that silence, observing what was happening to me, my body, and my family. And then, I jumped in fingers first and began to type. Writing has always been my compass, a way to navigate through uncertainty. By placing myself on the backs of words, I could dive into a question and wrestle it to the ground, transcend the impossible by becoming whoever I needed to be. When I was 12 and had my first surgery to remove a pre-cancerous spot from my vulva, I became Nancy Drew in my version of The Clue in the Crumbling Wall. Years later, I was Julie in a play I wrote called My Virginia, a composite character inspired by the stories of DES daughters who have had vaginal cancer. And now, I am Darci Picoult in my own story. No longer once or twice removed by a character, but me: fully exposed, fully nervous, and fully alive.

Virginia Woolf advocated women writers to have a room of one's own. A space where one could slip away from the demands and distractions of everyday life in order to create life on the page. In today's world, that means turning off your phone and unplugging from emails. Though I have been known to read my words out loud—startling my daughter, who asks, "Mom are you talking to someone?"—or type to the beat of Ella or Chopin, writing is essentially a solitary adventure wherein I stumble, explore, and sometimes find the perfect word.

So when my writing goes public, it is with great anticipation—particularly when I exposed myself and body to almost 9 million REDBOOK readers (who have never met me or my body). Will anyone connect to this story? Will it make readers run, or will they want to know more? Yikes, given everything I've exposed, how much more? I braced myself for whatever responses came in.

When the first email appeared, I read words which echoed my own experience. My heart relaxed with the connection, and I opened another; a woman who struggled with loss of sensation because of a spinal hematoma. A doctor wrote of her appreciation for clarifying what and where a vulva is. A woman who had a vulvectomy at 18 and was on bed rest, pregnant with twins, spoke of her isolation. A man who had testicular cancer spoke of his survival. Facebook messages appeared daily: Women and men wrote about their sisters, friends, partners, and selves with a depth and honesty that inspired my own. Just a sampling:

"I just read the article, and it was like all the same feelings I had when I found out that I had vulvar cancer. How in the world do I explain that to people? Most people don't even know what a vulva is."

"Although I have never had cancer, I've dealt with early menopause (at age 34), IVF, miscarriage, etc. It all makes you feel the antithesis of attractive and feminine."

"I was moved to tears because these are the same questions I had, but I had no pamphlet to guide me in dealing with this. There are no books written about this."

"The coexistence of illness and sexuality is so rarely written about. I think that experience often happens for women—perhaps in lesser degrees and more psychologically based—with childbirth, menopause, and other difficult periods in their life. And often women just retreat and stop making love. Your openness about holding on to your desire to keep this part of your life intact is something I strongly relate to."

"These types of experiences are what cause people, both men and women, to become all that they can be. Without this type of deep self-examination, we can never be fully alive—and who wants to be half alive?"

Thank you all for your insight and openness. Together we can take the title of the article and throw it on its backside, for this is no longer a cancer no one talks about. As one fellow cancer survivor told me, reading my words made her feel less alone. Having been graced by all of your words, I couldn't agree more.